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Well, I wish we could find out how many patients have been tethered and in what age ranges.

I think tethering should be considered for mature patients to try to halt progression and to straighten the lumbar if possible to avoid needing a fusion there.

I think more doctors should be trained and they should take the lumbar kids first and then the other kids and then the adults. I remain a little shocked how those mature women got tethered ahead of a kid.

Sharon, mother of identical twin girls with scoliosis

No island of sanity.

Question: What do you call alternative medicine that works?Answer: Medicine

Well, I wish we could find out how many patients have been tethered and in what age ranges.

I think tethering should be considered for mature patients to try to halt progression and to straighten the lumbar if possible to avoid needing a fusion there.

I think more doctors should be trained and they should take the lumbar kids first and then the other kids and then the adults. I remain a little shocked how those mature women got tethered ahead of a kid.

I don't think there is any problem with waiting lists queuing or anything, the window for those still growing is small but I don't hear of patients saying that the wait was too long and they ended up with fusion. Shriners have their strict criteria and are doing it under a government program. They publish their criteria and if you fit they put you on the list. The kids will almost always be pre Menarche and less than 13 years old. I would think it would be possible to get hold of numbers from them.

For people in UK it only seems a matter of a couple of months for surgery if they go to US so it can't be a problem for US patients?

DRs ABC do those outside shriners strict criteria so can include the fully grown but only if the curve is flexible. Again it doesn't seem a long wait - the doctors in the US who do mature patients seem to just decide if the curve if flexible and small enough etc. Almost all seem to be in pain though and no-one seems to be commentating on this which I find odd if the official line is scoliosis doesn't cause pain. It seems to me that VBT is to stop a curve that because of its size at the age is going to progress and cause damage later on. Yet the statistic keep saying that most curves do not do this. So you have to conclude that it is for cosmetic reasons really but again that flies in the face of what is trotted out from consultants.

I am a bit usnsure but you can't get anything definite as regards info because they are too many people who will just dis VBT anyway.

They do do double tethers also - not sure why you say that lumbar ones should be prioritised? surely sever thoracic ones are the ones that can do more damage if they get too big?

Almost all seem to be in pain though and no-one seems to be commentating on this which I find odd if the official line is scoliosis doesn't cause pain. It seems to me that VBT is to stop a curve that because of its size at the age is going to progress and cause damage later on. Yet the statistic keep saying that most curves do not do this. So you have to conclude that it is for cosmetic reasons really but again that flies in the face of what is trotted out from consultants.

I think VBT is only done on large curves that are highly likely to progress. Most large curves are likely to progress. I am not sure if they are using the bracing range in which case they will tether down to 30*. Certainly some of those smaller curves will not progress but anything over about 30* is not protective against future progression.

Do these patients with pain say that tethering relieved the pain?

They do do double tethers also - not sure why you say that lumbar ones should be prioritised? surely sever thoracic ones are the ones that can do more damage if they get too big?

Well I should clarify... all surgical range patients should go first. Among the ones still in bracing range, the lumbar patients should be prioritized so as to hope to avoid a fusion. In re thoracic curves, I am not convinced there is much of a difference between a fusion and tethering in terms of ROM mainly because most people do not bend much anyway through that area.

When stapling was talking about frequently, I also thought the lumbar patients should be prioritized there also. The stakes are higher. Both my daughters are fused T4-L1 and they say they feel normal. They are not aware that they have any lower ROM compared to an unfused person until I show them I can bend somewhat more to the side than they can. Front to back is similar to me. But they don't remember being able to bend that far to the side so they do not feel any lose in ROM. Given we know a lot more about fusion in the out years for a T fusion, and given it is critical to straighten the lumbar as much as possible to avoid needing to extend the fusion downward, if the tether cannot drive the same straightness in the lumbar as a fusion, I would have to chose fusion again for my daughters to try to save their lumbar.

Last edited by Pooka1; 10-12-2017 at 08:16 AM.

Sharon, mother of identical twin girls with scoliosis

No island of sanity.

Question: What do you call alternative medicine that works?Answer: Medicine

This is the bit that I find so fascinating. All of them who report back ( and it is an intimate group) say that VBT 'fixed' the pain. For me even if VBT is not an option the acknowledgment of PAIN in the scoliosis world is vital. None of the VBT patients have underlying causes for the scoliosis like Chiari etc otherwise they would not be candidates. I think you are correct about the large curves but at the stage they are having VBT, the curve is not that large. However the patient has yet to have the growth spurt and the curve is already in the high 30s so likely to progress. BUT we are told it is not done for purely cosmetic reasons so pain must be relevant. Remembering that these patients are under 13 usually.

I would love to get ALL scoliosis medics to acknowledge that scoliosis ( and I mean proper scoliosis) not just a technical one like a 12 degree curve, causes pain. That would be a breakthrough just from educating medics to have a treatment path for everyone, even when non-surgical- that takes into account patients can be in daily pain!